Perceptions of Primary Caregivers of Children with Disabilities in two Communities from Sindh and Balochistan, Pakistan

Arisha Qayyum, Seema Zainulabdin Lasi, Ghazala Rafique

Abstract


Purpose: This study explored the perceptions, attitudes and practices of primary caregivers towards children with disabilities in two communities from Sindh and Balochistan, in Pakistan.

Method: Six focus group discussions and seven in-depth interviews were conducted with 37 women in the two communities – one urban and the other rural.

Results: Primary caregivers perceived disability as physical, functional limitations and the absence of any functional body parts. Complications during pregnancy and delivery were regarded as the major cause of disabilities. Lack of financial resources and limited access to medical and rehabilitation services were identified as the main reasons for frustration among caregivers, resulting in their giving reduced attention to the child with disability. Caregivers felt that behavioural problems of children with disabilities were a major challenge, and also limited their participation in social activities.

Conclusion and Implication: There is a need to raise awareness among the families of children with disabilities and in the community at large. Home-based community-level interventions are needed to reduce the social stigma attached to children with disabilities.

doi 10.5463/DCID.v24i1.193


Keywords


Urban and rural communities; childhood disabilities; knowledge and practices; home management; inclusive community

Full Text:

PDF

References


Ceylan R, Aral N (2007). Hopelessness levels of mothers with and without disabled children. Pakistan Journal of Social Sciences; 4(6): 746-750.

Chan S (1997). Families with Asian roots. In E, W.H. Lynch, M.J. (Ed), Developing cross-cultural competence: A guide for working children and their families (2nd Ed.). Baltimore: Brookes.

Chiang LH (2007).Chinese and Chinese-American Families of Children with Disabilities. International Journal of Special Education; 22(2): 19-23

Glaser B, Strauss A (1967). The discovery of grounded theory: Strategies for qualitative research. Aldine De Gruyter, New York, USA. PMCid:224645

Groce NE. (1999). Disability in cross-cultural perspective: Rethinking disability. The Lancet; 354(9180): 756-757. http://dx.doi.org/10.1016/S0140-6736(99)06140-1

Jackson H, Mupedziswa R (1988). Disability and rehabilitation: Beliefs and attitudes among rural disabled people in a community based rehabilitation scheme in Zimbabwe. Journal of Social Development in Africa; 3(1): 21-30

Kermanshahi SM, Vanaki Z, Ahmadi F (2008). Iranian mother's perceptions of their lives with children with mental retardation: A preliminary phenomenological investigation. J Dev Phys Disabili; 20: 317-326. http://dx.doi.org/10.1007/s10882-008-9099-3

Marder L (2008). Every disabled child matters - But do they all benefit from benefits? Archive of Disease in Childhood; 93(1): 1-2. http://dx.doi.org/10.1136/adc.2007.126748. PMid:18156473

Miles M (1983). Attitudes towards persons with disabilities following IYDP (1981) with suggestions for promoting positive changes. National Council of Social Welfare. Islamabad.

Mitra S, Posarac A, Vick B (2012) Disability and poverty in developing countries: A multidimensional study. World Development; 41: 1-18. http://dx.doi.org/10.1016/j.worlddev.2012.05.024

Monk J, Wee J (2009). Factors shaping attitudes towards physical disability and availability of rehabilitative support systems for disabled persons in rural Kenya. Asia Pacific Disability Rehabilitation Journal; 19(1): 93-113.

Population Census Organisation (1998). Pakistan Census Report. Government of Pakistan. Available at: http://www.census.gov.pk/Statistics.htm.

Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J (2001). Life course impacts of parenting a child with a disability. American Journal of Mental Retardation; 106: 265-86. http://dx.doi.org/10.1352/0895-8017(2001)106<0265:LCIOPA>2.0.CO;2

Shahzadi S (1992). Perceptions of disability, expectations and aspirations about the disabled children and the problems faced by the family and siblings of mentally retarded children residing in Karachi. Unpublished PhD thesis, University of Karachi. Available at: http://eprints.hec.gov.pk/918/1/652.html.htm [Accessed on 1 July 2008].

Stein Z (1981). "Why is it useful to measure incidence and prevalence?" Int.J.Ment.Health; 10(1): 14-22.

Tareen KI, Mirza L, Mobin N, Qureshi AA (1982) Epidemiological Study of Childhood Disability. Survey/Study in Punjab (Pakistan). Interim Report. Lahore: UNICEF.

Thomas M, Thomas MJ (2002). An overview of disabilities issues in South Asia. Asia Pacific Disability Rehabilitation Journal; 13(2): 62-84.

Thorburn MJ (1993). Attitudes towards childhood disability in three areas in Jamaica. West Indian Med Journal; 42(1): 10-12. PMid:8503206

Thorburn MJ (2006). Attitudes towards childhood disability in three areas in Jamaica. Issues in Educational Research; 16: 19-25

WHO (1981). Disability prevention and rehabilitation - Report of the WHO expert committee on disability prevention, World Health Organization, Technical Report Series 668, Geneva. Available at: http://whqlibdoc.who.int/trs/WHO_TRS_668.pdf [Accessed on 1 January 2011].




DOI: https://doi.org/10.5463/dcid.v24i1.193



Copyright (c) 2015 Arisha Qayyum, Seema Zainulabdin Lasi, Ghazala Rafique

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Supported by:

netherlandsleprosyrelief_logo_rgb_-_new_logo_2014_120CBMlightfortheworld_logo_rgb_-_new_logo_2014_120     

© Disability, CBR & Inclusive Development